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Keeping Hope in the Fight Against My Daughter's Heart Defect

From the moment we received our daughter’s diagnosis, we felt hope. The doctors told us, “She has half a heart, we need to discuss options.” To us, there were no options. We were going to fight with everything in us to save our daughter’s life. So we fought; we fought hard.

We went to doctors’ appointments, read every piece of research we could get our hands on and spent time on social media connecting with other heart families. We wanted to know the secrets of the hypoplastic left heart syndrome families who had living children. What hospital did they use, what medications were their children on? We felt hopeful that if we could just do all the right things, our little girl would be OK.

Our daughter had hypoplastic left heart syndrome (HLHS) with an intact atrial septum. Basically this meant she had half a heart, with the most important chamber missing. She would need the three surgeries typically required with this condition, but she would also need immediate intervention at birth because of the extra complication that comes with an intact atrial septum. We were sent to one of the top hospitals in the nation, and we felt hope.

When Jaylee was born, she came out in critical condition. She had to be intubated immediately, and we did not even get to see her, let alone hold her. I wasn’t able to see my daughter for 12 hours, and I wasn’t able to hold her until she was 9 days old. She had her first open heart surgery when she was 3 days old. She did great, and we felt hope. The doctors told us she was one of the best cases they had seen of a baby with HLHS and an intact atrial septum. That gave me a lot of hope.

We spent about seven weeks in the hospital because she was having some feeding issues. She had a G-tube put in and she was able to get some good nutrition from my breastmilk. We felt so much hope. She was discharged home two different times, but each time she ended up back in the hospital because the symptoms of her heart failure became worse.

I remember the last time we left our house with her. She was showing so many signs of being really sick — vomiting, the bad type of clammy, low saturation levels and pale coloring. As we were walking out the door to take her to the emergency room, I knew in my heart we would be admitted and that there was a chance she would never come home again. I took her back into her nursery and asked my husband to get a few pictures of her. Looking back, this was a good decision.

We went straight to the ER and were sent to the pediatric intensive care unit (PICU) as Jaylee’s saturations were terrible. But I felt hope. I knew she was under the best care and would be getting strong medication administered through IVs. As days turned into weeks, the cardiac team let us know her heart failure was severe, so severe there was nothing they could do to fix it. The typical three-stage surgery we had been counting on since they day of her diagnosis was no longer an option to us. Jaylee needed a heart transplant. She was listed at the highest level, a status 1A. I felt hope. In fact, I felt more than hope. I felt certain she was going to get a new heart. I became even more obsessed with researching. I stayed up one night and found a way to somewhat see where our daughter was on the transplant list. It’s more complicated than that; no one has a “place in line” on the list. However, through my sleuthing and obsessing, I could deduct she was at the top of the list. She would get the next heart that fit the age/weight/height requirements she had. I felt so much hope.

I struggled with the reality that when Jaylee got a new heart, it meant another child had died. Everyone was always quick to reassure me the other child would have passed away whether their heart went to her or not. So I felt hope. I assumed it was only a matter of time.

As we waited, Jaylee continued to struggle. Something was always off. Her heart rate was high, her saturations low, too many secretions, bad blood pressure, or she had an infection. Yet I got accustomed to seeing these things and they were no longer shocking to me. They were our “normal.” I just knew that Jaylee would get a new heart, and I truly believed everything would be OK.

Then one day, everything was not OK. Her heart rate was high; her blood pressure was the lowest I had seen. I heard the doctors making plans for her treatment, and I felt hope. I knew they would give her some medications, possibly a blood transfusion, and she would stabilize. The disheartening time came when there were many doctors and nurses in the room, giving her various treatments. I stared at her monitor, waiting for the numbers to change. I thought everything was going to be OK. But it wasn’t. I don’t think I realized she was dying. I don’t think it hit me until the attending doctor told me I should hold her — something I hadn’t been able to do since she had been intubated four weeks prior. At that point, I knew her fight was over.

Watching your child die is worse than you can imagine. It didn’t feel real; I couldn’t believe it was true. In fact, I kept repeating, “This can’t be real. This is not happening.” It was truly my worst nightmare. I cried, I shook, I wanted to die with her. For some reason, I took comfort knowing we were not alone in facing this battle. In fact, I told Jaylee to go hug all her heart friends who had gone to heaven before her, and in turn, I promised her us heart moms would take care of each other. I held her and kissed her one last time. Our fight was over. At least it felt like it was over.

It’s been about eight weeks since Jaylee went to be with Jesus. As a side note, I know that phrase may sound cliché, but trust me, I believe it with every fiber of my being, and it’s the only way I can keep going. Less than two months ago, we said our final goodbyes.

You know what? I still feel hope, and I now know this fight is not over. So I continue fighting. I continue fighting for my sweet girl who should be here with us now, playing with her brother and learning to crawl and eat solid foods. I fight for the other heart families who have lost their children and for those who are still battling. And I fight for my daughter’s memory. I fight to keep her short but impactful legacy alive.

If you run into me at the grocery store and ask me how many kids I have, I hope you have a minute, because I will tell you all about my daughter. It may hurt, but she’s not some secret to hide. She is the bravest human I have ever met. She may have lost her fight, but we still have plenty to keep fighting for. And I plan to continue her fight until I get to go be with her in Heaven.

Image via Thinkstock.

If you or a loved one is affected by infant loss, you can find grieving resources at The Grief Toolbox.

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